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The Relationship Between Social Media and Organ Donation? It’s Complicated.

170518_FT_healthyPatientFor transplant centers, these occasional, often social media–driven spikes of interest can be difficult.

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A year and a half ago, transplant surgeon Talia Baker, who specializes in living donors, found herself with an unlikely problem: She had too many people offering up their organs.

Baker was taking care of a baby, only a few months old, with just days to live. When it turned out that neither parent was a match for the organ the child so desperately needed, the baby’s social media–savvy mother posted an entreaty on Facebook, alone with the donor hotline number for Baker’s transplant center. Her post, which Baker calls “heart-wrenching,” spread rapidly, and within 24 hours, they’d received more than 100 offers to donate.

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“We work in feast and famine,” Baker says of her profession. “Sometimes there’ll be a ton of organs and we’re up for a week. … And then we’ll have two weeks where we do nothing.” But even compared with feast times, the generosity inspired by this child would have been remarkable, a clear product of the deeply felt connections that strangers can form on social media.

For transplant centers, these occasional, often social media–driven spikes of interest can be difficult, partly because they’re rarely set up to screen dozens of calls that can come in when a story finds wider notice. With the clock ticking, Baker had little time to cull through the list in search of an ideal candidate. Meanwhile, professional ethics further complicated the timetable: She had to take time out of her own schedule to explain to each of the potential volunteers what they’d be getting into, ensuring that they understood it was a major surgery—one that could put them at risk.

After carefully triaging her list, Baker found an appropriate fit, one that would ultimately save the baby’s life. Along the way, though, she learned that many of the other volunteers might still be willing to donate even if they couldn’t give to the charismatic patient who’d caught their attention.

Thinking it might be possible to leverage those reserves of generosity, Baker reached out to Jenna Arnold and Greg Segal, co-founders of a nonprofit called Organize that aspires to bring the organ donation process up-to-date for the social media age. As I wrote last year, Arnold and her collaborators had learned that a tweet or Facebook post about your desire to donate your organs after death might be enough to register you . At the time, they set out to make it easier for state organ registries to access that information—and to make it easier for family members to process the deceased’s wishes as a difficult time. Living organ donation, however, was a different and less clearly explored territory.

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Baker tells me that she sent Arnold and Segal a snapshot of her desk covered with the files of possible donors. Though living donation differed from Organize’s previous work, it struck them as no less urgent. “There’s 90,000 people waiting for kidneys, so the only way we’re going to make substantial dents in the list is if more people raise their hands,” Arnold told me. Professional guidelines bar surgeons from seeking out donors themselves, but nothing stops them from drawing on those who come in for other reasons—like the dozens of prospects who’d spoken up on a single child’s behalf.

With that in mind, they created a website, Give and Live , that’s meant to help take some of the educational burden off transplant centers, while also funneling potential donors toward the facilities (and patients) that need them most. Briefly featured in a recent Last Week Tonight segment on kidney dialysis , the site, which debuted this week, leads visitors through the basics of living kidney donation before working through the process, risks, and potential complications —much as a surgeon would before moving ahead with a procedure. This educational effort is crucial in part because living organ donation threatens to violate the fundamental medical tenant to do no harm. “We’re taking a perfectly healthy person, doing a fairly large operation on them that has no medical benefit that you could argue,” Baker says. The surgery can even end in a donor patient’s death , though that’s rare. Give and Live aims to make the conversations about risk a little easier by frontloading some of the information.

Once people have made it through the fundamentals, Give and Live provides the opportunity to begin the process. Organize’s deceased donor site tailors its registration forms to help users negotiate the vagaries of their state registries. Similarly, the new site starts by collecting ZIP codes to link visitors to their nearest transplant facilities. That should help spread donations more widely and possibly allow overloaded centers to redirect volunteers that they can’t get to when they’re slammed.

A handful of other sites already exist to facilitate living donation—notably, WaitList Zero , the National Kidney Registry , and the Alliance for Paired Donation —but this effort to connect donors and centers is potentially transformative. As Segal puts it, “By allowing them to start going through the process and fill out some of the initial questions, we can help transplant centers do a much better job on the intake side so that they’re not totally overwhelmed.” Together, those factors mean fewer potential missed opportunities with would-be donors who slip between the cracks during unusually busy periods.

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By providing a centralized venue for education, recruitment, and broad distribution, Give and Live may also allay some of the concerns that bioethicists have raised about the juncture of social media and living donation. According to one reflection on living donation from the New England Journal of Medicine , “Two central objections are that the practice is unfair and that it threatens the view that an organ is a ‘gift of life,’ not a commodity to be bought and sold.” Some have also worried that the ease of Facebook entreaties might inspire donors to make their decisions too lightly or otherwise disrupt norms of informed consent.

As Segal explains it, “There’s a fear pervasive in the transplant space—whether or not it’s well-founded—that pairs that have met each other on social media, it’s harder for the center to feel really comfortable.” There’s always the risk that a recipient is pressuring a donor or that other morally dubious considerations have come into play, and those possibilities can make surgeons squirm. That said, a kidney is a kidney, and a life saved is a life saved.

In any case, there is no reliable way to keep people from donating for dodgy reasons, just as there is no way to stop those in need of a donation from soliciting online. Give and Live simply aspires to help direct those who might be interested—whatever their reasons—toward the most informed and optimal choices.

Among other things, it’s attempting to encourage organ chains, whereby, as the site explains it, an anonymous, non-directed donor’s organ “is transplanted into a recipient who had a donor willing to give a kidney, but whose donor was not a match for them.” With the right setup—and full collaboration between transplant centers—a single donor can theoretically set off a reaction that allows dozens to get off dialysis. That’s only possible if we can find more non-directed donors like those that Give and Live hopes to inspire.

Regardless of where the site goes, Baker is excited about the ways new technologies might help reshape her work. “It’s our responsibility as transplant surgeons to ensure that it’s a safe process, an equitable process, and an ethical process,” she says. “It’s gonna happen.”

This article is part of Future Tense , a collaboration among Arizona State University , New America , and Slate. Future Tense explores the ways emerging technologies affect society, policy, and culture. To read more, follow us on Twitter and sign up for our weekly newsletter .

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